About This Website

This website presents information about myalgic encephalomyelitis, a disease that was first reported in the medical literature under the name “atypical poliomyelitis” in 1934.

The name “myalgic encephalomyelitis” was first used in 1956, to describe a particularly noteworthy outbreak among nurses at the Royal Free Hospital in London. (The London Royal Free Hospital is pictured in the logo used for this website.)

A particularly severe outbreak of M.E. in the Lake Tahoe area of the U.S. in the mid-1980’s forced the Centers for Disease Control to investigate in 1985 and then to establish the new illness category of “chronic fatigue syndrome” in 1988.

This website is presented by Paradigm Change, an organization with the goal of providing information about the role of mold toxins in M.E. and other chronic illnesses. In addition to the articles referenced in the main menu, some additional materials formerly on the Paradigm Change website are linked below.

Those signing up for the Paradigm Change newsletter also will receive a free PDF copy of the book Back from the Edge. The book summarizes the remarkable life of Erik Johnson, a survivor of the Lake Tahoe epidemic who has helped many M.E. sufferers to improve their health by sharing his techniques for avoidance of small amounts of mold toxins.

Updates about new information about M.E. is also shared on the Facebook page associated with this website.

Sincere thanks are offered to the many M.E. advocates who have provided comments and suggestions during the development of this website. I am especially grateful to Khaly Castle, Liz Willow and Danny Zee for their contributions.

I hope that you find the information on this site to be helpful to you. Thanks very much for visiting here.

Lisa Petrison, Ph.D. Executive Director Paradigm Change

TREATMENTS

This section includes a summary essay co-written by Keith Berndtson, M.D. in 2013, discussing various M.E. treatment options – killing pathogens, addressing toxic mold and other environmental issues, improving the gut, nutrition, hormones, drugs, alternative treatments and more. It also lists peer-reviewed medical journal articles and media articles related to treatments. A discussion of patient effectiveness ratings of a wide variety of treatments (including the negative efficacy of exercise and antidepressants for many patients) from the Cure Together website also is included. (Pictured: Remediators wearing hazardous material suits clean up Stachybotrys – also known as “black mold” – from a residence.)

M.E. and depression are often co-morbid conditions but are not the same thing. Included in this PDF is a discussion of the similarities and the differences with regard to the conditions, as well as citations and brief summaries of articles from the medical literature.

Peer-reviewed medical journal articles cited and briefly described in this section are related to the topics of clusters (including several from the Lake Tahoe epidemic); prevalence; resulting deaths; presentation characteristics; seasonal variation; issues related to environmental toxicity and loss of tolerance; various risk factors (including vaccines, infections and trauma/stress); and a wide variety of causal theories.

This PDF focuses on issues such as societal costs; health care issues; social recognition and attitudes; consideration of issues related to children, adolescents and elderly who suffer from the disease; inadequacies in research funding; treatment availability; housing; employment and disability; right to die; media portrayals; activism; and techniques used to gauge symptoms and severity. (Pictured: Jessica Taylor has been seriously ill with M.E. since she was a young child. She now heads Share A Star, a U.K. not-for-profit organization with the goal of helping other children with the disease.)

This section provides links to peer-reviewed articles focused on issues of illness course/context and on coping strategies. Media articles profile both famous people (including Laura Hillenbrand, Elisabeth Tova Bailey, Peter Hobbs, Keith Jarrett and Michael Crawford) and ordinary people who have suffered from the disease. Links to books, movies and TV shows about the disease also are included. (Pictured: UK musical theater performer Michael Crawford, who became disabled with M.E. in London and then recovered in a pristine coastal area of New Zealand.)

Information on this website is presented by Paradigm Change.Links are in orange (no underlining).

FREE BOOK

Sign up for email updates about M.E. from Paradigm Change and receive a free PDF copy of the book Back from the Edge, summarizing the illness experiences and eventual recovery of a survivor of the Lake Tahoe illness outbreak.